While sometimes thought to be too difficult to do effectively or ethically, social researchers can and should do research with people living with dementia. With the right mindset and supportive tools in place, it’s possible to ensure that people living with dementia are fully informed and encouraged to share their views.
At IFF, we have placed lived experience at the centre of our research across the whole dementia care journey. We’ve spoken with dozens of people living with dementia, carers, and professional care staff, and with this blog we’d like to share our own experiences of the process.
Using a person-led approach
We know from our previous research that ideal dementia care is ‘person-led’, meaning people feel empowered and able to shape their own care in ways that meet their needs. Person-led approaches involve flexibility, adaptability, compassion, and genuine curiosity. Those same principles apply to our research process when we’re engaging with people living with dementia and those who support them.
After all, if the research is intended to shape the lives and the care environments of people living with dementia, who better to tell us what would be helpful and necessary than the people directly affected?
What works in practice: lessons from our dementia care research
Communication styles differ
Communication will look different for each person. Body language and tone of voice are important for all qualitative research, but particularly for people living with dementia, as it can affect speech and language processing. At the same time, we want to avoid making assumptions about what a person may be thinking or feeling.
Instead, we work together with the person and with those who support them to try to understand what may be happening. But, that doesn’t mean pushing for clarification. We should recognise that it’s ok if we do not always fully understand how a person is feeling.
Responding appropriately
We also want to respond to the person as they are. This means accepting the person’s mood, behaviour, and words as they are being expressed in the moment, rather than bringing in our own expectations or hopes (even if we’ve had previous interactions with them).
Dementia is an umbrella term for lots of complex conditions involving a wide range of symptoms. Things can change for a person on a day-to-day or moment-to-moment basis, including during the interview itself. We may need to adjust the type of questions we’re asking or pause and return later. We want to move at the pace preferred by the person we are speaking with and, importantly, allow for silences and time to think within the conversation.
Accessibility is key
Consider how accessible your questions are, and try different things if needed. Dementia can affect the brain in different ways, so having various tools in your toolbox can be a great help.
Visual aids such as diagrams can help where you need to explain something, as they can convey information more readily than words. Photos and drawings can also spark memories or can be used for reflection on hypothetical scenarios.
Another technique is to find out key information about the person early in the conversation (e.g., the name of their family members or carers, or what their typical day looks like). This can help with prompting and recall later if needed.
And, while it may sound basic or obvious, using straightforward question structures and easy-to-understand language goes a long way.
A valuable process
In our projects, people living with dementia were keen to participate and expressed sincere enjoyment about the process. The opportunity to share their stories and hear their views was a real positive for many.
It was also a highly meaningful experience for us to meet and talk with people living with dementia and their carers. Being able to have these conversations is one of the best and most rewarding parts of working in social research. What’s more, the insights that people shared directly informed our understanding of dementia care and its impacts. We’ll be sharing more on these insights and findings in a follow-up blog coming soon.
For more about our work involving people living with dementia, you can check out the following:
- Interviews with people living with dementia and unpaid carers about their perceptions of how equipped paid care staff were for support those living with dementia, in England, Wales and Northern Ireland (April 2026) – for the Alzheimer’s Society
- ‘Lived experience’ panel with people living with dementia and unpaid carers about best practices in dementia care (March 2026) – for the Care Quality Commission.
- Interviews with people living with dementia and their care partners about their experiences with post-diagnostic support, in Scotland – for the Scottish Government to be published later this summer.
- Upcoming interviews with people living with dementia about their experiences with support services in hospitals and communities in Essex – for the Alzheimer’s Society. Qualitative research will start later this year.